Rare Disease Day in Russian Federation
The Russian Federation has participated in Rare Disease Day since 2009, involving the general public and stakeholders alike. Events have varied from photo and children’s art exhibitions, to roundtables and a drive for signatures advocating for rare diseases. In 2015, an open meeting in Moscow called for greater legislative changes to defend patient rights under the Ministry of Health.
The Russian Federation has two National Alliances, the National Association of Patients with Rare Diseases '"GENETICA" and the Russian Association of Rare Diseases. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page.
A Call-free Hotline on +7 (800) 555-00-48 operates in the Russian Federation that you can call with any questions.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].
If you would like to get involved, please write to us at [email protected].